Monday, April 16, 2012

Rough few days

Wanted to just give up today...throw in the towel!!! We don't know what's up with Dakota lately. Seriously things can never just stay the same around here or just keep looking up.When you think you are coping okay...not good but at least okay and life is manageable...not great but manageable...look out...at least for us. All the sudden the last few days Dakota is having a lot of spasticity and tone again and crying ALL the time. Not just a whine cry a bloody murder cry. I know when he gets all tight and stiff like he does it probably hurts his muscles and makes him cry more and there is nothing I can do to help him. I can't tell if he stiffens up and it hurts and then he cries or if something else is bothering or hurting him so he cries and stiffens up because of that. There are a million and one things that I just don't know and no one to turn to. As I drove in my car and he was screaming and crying with tears, snot, and spit running down his little face I just cried too and let the tears and snot run down my face too.

There is nothing worse as a mom to not know how to help your child. There is nothing worse then not being able to put a smile on your child's face no matter how hard you try. And there is nothing worse then not having anyone to turn to to help you. My friend said can you call the doctor? Yeah...I could but after all of our experiences I can tell you right now they won't know either. They can check out his ears and throat and do some vitals but in the end there guess is probably as good as mine. They will probably just switch up some meds to experiment and hope that helps...so my messages I left them today are really no comfort for any help. I wished so badly there was SOMEONE, ANYONE I could call that could help me, give me some tips, some suggestions...but there is NO ONE. I just wanted to talk to someone that could understand me and all of my mixed up feelings and emotions. Someone that could give me some hope that it WILL get better. I did call on my Heavenly Father through my tears as I drove...I hope He heard me tonight...I hope He will help.

It's times like this where I have to wonder...why does he have to suffer like this? Why does he have to be in so much pain, be so miserable and unhappy? Why did he choose to stay here instead of go to that place of peace and happiness...free from all pain and sorrow? To teach me I guess. To touch the lives of others. To be an earthly angel to help others appreciate what they have and remember what is important. I look forward to the day when I will see and understand the whole plan! For now...I will keep trusting in my Savior that there is a GOOD purpose to all of this.

I will try and remember the quote my mother in law has in her bathroom tonight..."There is always, always, something to be thankful for." I know there is...even through my tears. That's what keeps me going when I don't want to take on another day!

11 comments:

I LOVE YOU AND I HOPE THAT THING TURN AROUND! I THINK OF YOU GUYS EVERYDAY. EVERYTIME I LOOK AT MY KIDS I WOUNDER WHY YOU AND YOUR FAMILY.? THE ONLY THING I CAN THINK OF IS BECAUSE YOUR STRONG AND POSTIVE. I CAN'T SAY I KNOW HOW IT FEELS BUT I HAVE SEEN THOSE IN YOUR TRAUMATIZED SHOES AND I JUST HOPE THAT EVERYTHING WILL GET BETTER FOR YOU. I WISH I COULD GIVE YOU AND YOUR LITTLE FAMILY A HUGE HUG. I HOPE YOU KNOW YOU ARE IN MY PRAYERS AND MY FAMILY'S PRAYERS. WE LOVE YOU SO MUCH! GOOD LUCK AND HANG IN THERE. YOUR A ROCK!! WITH LOVE YOUR COUSIN, SHAYLA

You don't know me, but are an inspiration to me. I have a daughter that was sick a lot and in and out of the hospital with infections when she was younger. It's so hard to see your child hurting and know there's nothing you can do. When I had those moments the thought always came to mind, "I never said it would be easy, I only said it would be worth it" That thought, prayers and blessings always seemed to help me. Hopefully knowing that there are so many people out there praying for your family can help lighten your load even just a little.

1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

Dakota has a special mission. God is using Dakota to bring about His work, and will continue to do so.

I can only imagine how hard it is. So many times I read your posts, thinking that if Preslee lived, I would probably be living a similar life. Both of these kids are performing miracles, just in different places. Hang in there, I know it has to be so hard to watch him struggle. The only thing I can offer are prayers. So I'll send many prayers your way.

I am one of those, who is learning and being reminded everyday what really matters, from sweet Dakota. I am so sorry things have been rough. I don't have answers, but I am always here to listen!! Anytime. Hang in there, love you!!!

I taught Sharing Time in Primary on Easter Sunday and thought about sweet "KOTA" as I taught the kids about the Resurrection and how Dakota will be perfect someday.. no more suffering, no more hardships just that sweet boy that we know is still there! I love you dearly Tessie! I often think that parents with special angel children no matter what the case may be are CHOSEN SPECIFICALLY by our loving Father in Heaven because he KNOWS they can handle these trials and hardships that are placed in their way. You and Zach are special and I love and respect both of you so much! I love ya lots! -Natalie

Found this and thought of you and your sweet soul...“When the frustration of my helplessness seemed greatest, I discovered God's grace was more than sufficient. And after my imprisonment, I could look back and see how God used my powerlessness for His purpose. What He has chosen for my most significant witness was not my triumphs or victories, but my defeat.”

You don't know me but I just wanted to say, hang in there. You are a great mother that loves your son unconditionally and he knows you are there and trying even if he cannot tell you or show you. I know you are making it better just being there with him and trying.Your story encourages me to be a better mother and to appreciate all of the small things in life.

Be strong Tessie! My little sister was handicapped with lots of problems. Half the time we didn't know what was wrong with her but she blessed so many lives and converted some people to the gospel. Dakota is such a sweet spirit.You and Zach are wonderful parents.Keep strong we love you and we are praying for your family!

You dont personally know me. I read your blog quiet often and LOVE reading your posts. You are a remarkable woman! I have NEVER lost a child, But like you I know what it is like to not know how to fix your child. How to make them smile or happy! I have a son that is on the Autism Spectrum. Although he is verbal commuincating his needs is NOT easy. And getting a Doctor to "fix" his problems like you it is just a med change and we hope for the best. You and your sweet little family are in my thoughts and prayers often. Thank you for sharing your life with us.

Tess, those adorable videos of Dakota in your most recent post made me smile too :) He is so handsome, and I know that you miss him. Reading your post, makes me reevaluate everything I am doing as a mother. Makes me want to do better, to be better. Savor every single day that I am blessed with her, because there is no guarantee for tomorrow. Love you Tessie, Amanda

you dont know me, Im friends with your sisters but somehow I found your blog and LOVE to read about your sweet little Dakota. He melts my heart! Im in tears over your post (and glad my husband is out of town so I dont have to tell him why Im crying at 11:30 at night on the computer!). I have a son who has OCD and ADHD and it breaks my heart when he asks WHY Heavenly Father made him like that. I know your pain. I, as you Im sure, would love to take it all away and have ME have the suffering. I wish it was that easy. You are so strong though and its OK to have hard days!!! Looking back Dakota has come a lONG ways in a short amount of time!So, long post short, keep your head up and know that there are MANY that are praying for your family. And keep up the posts, I really enjoy them:)

I'm the wife to a blind man and a mom to a brain injured angel boy! Never imagined either of these in my "story" of life but I have learned to expect the unexpected. My blog is my journal of this crazy adventure called life...the good, the bad, and the ugly. I try my best to live each imperfect day wonderfully! Sometimes I succeed and sometimes I fail!! But I wouldn't trade these trials for the world. They have taught me ALL of the most important things I have EVER learned in life and have made me the person I am today!!